I have a message into Mayo and one into Cleveland. My primary has offered to call them. Right now Wash Univ thru my previous hep dr said they could not remove my gall bladder. The surgeon my primary doctor said he got a call and said I needed to to to a tertiary center-I had no idea what they even was. My son 5 years ago had a liver transplant at BJC with no issues. NORD reached out to me due to some rare abnormalities and has offered to advocate for me. I know thru an endo fip that I have a spastic esophagus. I have a lot of vitamin issues-a scurvy one is up to 12 incidents that GARD said hadn’t been seen before. Two years ago my back collapsed on itself but cement fixed it. There is a rare left circumaortic left renal vein that appeared on this current MRI. Several centers have said that I am too healthy for a living donor liver transplant. It seems like an oxymoron. I have never drank or smoked. I went to Mayo for a uterine biopsy about a year ago because BJC said no to that. It was done as an office procedure with no problems. I joined an Apple study almost 4 yrs ago that was suppose to last 4 months. It reported afib but more tests affirmed no afib just symptomless extra beats. No treatment needed.

I went back to last 4 MRIs-
Gallbladder mentions:
July 11,2022-Gallbladder contracted
July 2021-Adenomyomatosis at the fundus
July 2022-some fluid in gallbladder
No gallstones-

I have had bile vomit, in stool, in urine. The pain now is daily—nights worse. I am not allowed OTC pain and I don’t take prescription pain meds. The pain from this recent attack made me a cheater-there have been several times I took extra strength Tylenol because I couldn’t take it. I take meds for HE but I think it more for the fact that the xifaxin keeps down inflammation. I take3 pills a day for ascites-previous hep said no ascites because if pills drain them you don’t have them-same for varices, if they don’t bleed you don’t have them. The only other meds are 70,000 iu of D weekly, 3,000 of C, 50,000 of A, folate acid, B6, and Zinc. The vitamins started about a year after liver disease. Liver disease is in my family: Mayo geneticists have been looking at it. I believe there is a mito problem but science isn’t there yet.

I put myself on an ultra bland diet back in Nov. No fried foods,no spices, no processed, no fast foods, red meat 2 small portions twice a week, all fat removed before cooking meat. My body hates all food. Interesting thing is my weight doesn’t fluctuate even though less calories.

If the HIDA doesn’t reveal any clues then what? I don’t have a plan. Is the answer to let nature either heal or kill you? This disease adds a very deep questioning of your existence. Somehow I know the answer but I can’t surface it.